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In Guatemala, the slogan is “Indetectable = Intransmisible”
(I=I); in the Netherlands, it’s “Niet meetbaar = Niet overdraagbaar” (N=N); and
in Turkey, “Belirlenemeyen = Bulaştırmayan”
(B=B). One of the most striking aspects of yesterday’s pre-conference on
“Undetectable = Untransmittable” (U=U), held in advance of the 22nd International
AIDS Conference (AIDS 2018) in Amsterdam, was the extent to which the campaign
has energised advocates around the world.

“U=U is a fact that every person with HIV around the world
should know about,” said Jesús Aguais of AID for AIDS International, an
organisation working in six Latin American countries. “People have the right to
be informed and it is our responsibility to disseminate this information.”

“I can’t believe this information has been known for ten
years and I’ve only heard about in the past six months,” commented Lucy
Wanjiku-Njenga of Positive Young Women’s Voices. She said that not many of her
peer group in Kenya know what U=U means. Those who do know about it heard about
it from a friend or on social media, rather than from a doctor or care
provider.

The quotes she presented from other young women testified to
the impact the U=U message can have:

“This is a message of
hope to those living positively. It is the success that comes along with
adherence. The victory after all those days you feel like the drugs were a
burden. With this, young women can lead a life without worry of infecting their
partners.”

“U=U gives young
people who acquired HIV through vertical transmission like me a sense of
‘normalness’. For the first time, I see I am not afraid of infecting someone
else because I am virally suppressed! I can finally have a fear-free relationship.
I am the safest relationship any guy can have!”

Alex Schneider’s organisation Life4me+ works across
Eastern Europe and Central Asia. For him, the Russian language slogan “НЕОПРЕДЕЛЯЕМЫЙ = НЕ ПЕРЕДАЮЩИЙ” (Н=Н) is a new tool for advocacy. It
can help raise broader public awareness of HIV, reduce stigma towards people
living with HIV, undermine self-stigma, increase HIV testing, motivate early
initiation of treatment and improve treatment adherence. So far, 60
organisations, including eleven state organisations, have signed on to the
statement in the 14 countries of the region.

Nonetheless, there are very real barriers to treatment in
the region, including frequent stock outs of medication. In terms of the
90-90-90 targets, currently 63% of people with HIV are diagnosed, 28% of those
diagnosed are on treatment, and 22% of those on treatment are virally
suppressed.

In many low- and middle-income countries, viral load
monitoring is not routinely available, making it impossible for an individual
to be confident that they really are undetectable. U=U provides an additional
argument for increasing access to viral load monitoring.

In Vietnam, the Centers for Disease Control and Prevention
(CDC) has promoted the slogan “Không phát hiện
= Không lây truyền” (K=K). John
Blandford of the CDC said that the campaign was conceived as an intervention
that would both support changes in HIV care and reduce stigma. The information
has been shared via social media, in community meetings and through press
coverage.

The community advocacy has helped build support among people
with HIV and healthcare practitioners for a switch from CD4 to viral load
monitoring. The country’s treatment guidelines are now aligned with K=K, so
that a key marker of success is two consecutive viral load test results of less
than 200 copies/ml. The proportion of people having their viral load monitored
increased from 21% to 73% in a year, with 93% of those on treatment now being
virally suppressed.

Science

The pre-conference opened with Anthony Fauci, probably the
United States’ most senior HIV research scientist, reviewing the evidence that
underpins U=U. Since the mid 1990s, data showing the inverse relationship
between the level of virus and the rate of HIV transmission have been
accumulating. The introduction of combination therapy “was the definitive
moment of U=U and we didn’t even realise it then,” he said.

The research studies HPTN 052, PARTNER 1 and Opposites
Attract have provided the strongest evidence. Tomorrow the final results of
PARTNER 2, the study which more precisely quantifies the potential for HIV
transmission during anal sex, will be presented at AIDS 2018. It is likely to
be the most discussed study at this year’s conference.

Nonetheless, Fauci did not feel he needed to wait for these
results to state: “The evidence that undetectable equals untransmittable is
overwhelming.”

Pietro Vernazza was presented with a lifetime achievement
award for the 2008 Swiss Statement he co-authored and other work which has laid
the basis for U=U. Clearly moved by the advocates’ response to his work, he
went back to the philosophy of science to explain why he felt that the
accusation of the Swiss Statement not being founded on evidence was unfair.

If the hypothesis is that HIV can be transmitted when a person is taking effective antiretroviral
therapy, then the null hypothesis is that HIV cannot be transmitted in these circumstances. In science, it is the
null hypothesis which a researcher aims to disprove or falsify.

He said that the position of the ‘HIV establishment’ had
always been the former, that there remains some transmission risk when a person
has an undetectable viral load. He said it was up to those who hold that
position to find a single documented case of transmission from a person with a
durably suppressed viral load.

Vernazza quoted the logical philosopher Irving Copi: “In
some circumstances it can be safely assumed that if a certain event had
occurred, evidence of it could be discovered by qualified investigators. In
such circumstances it is perfectly reasonable to take the absence of proof of
its occurrence as positive proof of its non-occurrence.”

Breastfeeding

One
remaining area of scientific uncertainty concerns breastfeeding. Eliane
Becks Nininahazwe, a woman from Burundi living in the Netherlands, said that
many women were waiting for the day when they could feel confident that U=U
applies to breastfeeding. “Please people who are doing the science, hurry up!”
she said.

Linda-Gail Bekker of the Desmond Tutu HIV Centre said that
there are still gaps in the data, but there is clearly a strong relationship
between viral load and the potential for transmission.

She pointed to two African cohorts (from Tanzania
and Malawi) with a
total of 477 infant-mother pairs in which no HIV transmissions have occurred from
mothers with a plasma viral load
below 100 copies/ml. However, some transmissions occurred in the latter study
from women whose viral load would be described as ‘undetectable’ using a higher
cut-off. This could be due to viral load being detectable between the
(relatively few) occasions when it was measured, or due to reservoirs
of virus in breastmilk that can’t be eliminated by antiretroviral therapy.

Even if she could not be definitive, Bekker said that her
take-home message was that women taking HIV treatment who have an undetectable
viral load have shown very little risk of HIV transmission. Weighing up the
multiple benefits of breastfeeding for the infant with this low transmission risk,
she said that it was appropriate that women in low- and middle-income countries
continue to be recommended to exclusively breastfeed for six months after
birth.

Pietro Vernazza said he had reviewed the same body of
evidence to consider recommendations for the high-income setting of
Switzerland. For an optimal scenario of a woman who was adherent to her
medication and had a suppressed viral load of below 50 copies/ml throughout
pregnancy and breastfeeding, his group had not been able to identify any
confirmed cases of HIV transmission. While there are still gaps in the data, this
risk needs to be considered alongside the proven benefits for all infants, such
as fostering contact between mother and child, the anti-inflammatory and
antimicrobial substances contained in breastmilk, and the development of the
gut microbiota.

Given clinicians’ uncertainty about the balance of potential
harms and benefits, he suggested that a shared decision-making approach was
appropriate. Breastfeeding should not be actively promoted to women living with
HIV in Switzerland, but women who choose to breastfeed should be supported by
their clinical teams, in particular with adherence support and regular viral
load monitoring.

Messaging

How can organisations describe U=U in a way which is
meaningful to people living with HIV, their sexual partners and the general
public? Whereas the concepts of ‘treatment as prevention’ (TasP) and ‘universal
test and treat’ (UTT) are rooted in public health and describe the impact of
widespread treatment in a population, ‘undetectable = untransmittable’ focuses
on the individual. The slogan has already reached far more people living with
HIV than the idea of TasP ever did, but the language used is complex and may
not reach the widest audience.

Michael Brady said that it was in 2016, after the
second release of data from the PARTNER study, that the UK organisation the
Terrence Higgins Trust decided it had a responsibility to share the information
in a clear and definitive way. They would have to evolve the language, so that
it would be clear, concise and easily understood, he said.

A number of slogans were tested, including “Yes we are
sure”, “This changes everything”, “Won’t pass it on” and “Can’t be passed”. Two
made it to the shortlist – “I’m not a risk” (which resonated most with people
living with HIV) and “Can’t pass it on” (which had greater purchase with the
wider public).

It was the latter slogan which has been taken forward. Without
a larger than usual budget, it has been one of Terrence Higgins Trust’s most
successful campaigns in terms of reach and exposure, especially on social
media. Brady attributed this to the simplicity and definitiveness of the
message, as well as the support of community advocates.

Nic Holas of the Australian online organisation the Institute of Many
said that having people with HIV understand U=U was only half the battle. They
needed their sexual partners and potential sexual partners to understand it as
well. A particularly important audience are pre-exposure prophylaxis (PrEP) users and his organisation has
developed a series of videos in collaboration with Dynamix International, one
of the main companies importing generic PrEP medication to Australia, the UK and
elsewhere.

While PrEP and U=U are often described as having synergies,
he pointed to tensions between the two approaches. Some PrEP users remain
fearful of and stigmatising towards people with HIV, he suggested. They prioritise
their new found freedom but ignore the fact that PrEP could only be developed “after
people with AIDS put their bodies on the line”.

“In the age of PrEP, people living with HIV must not shy
away from taking up space and ensuring our voices are heard,” he said. “It is
not enough to end the HIV epidemic with PrEP and leave us isolated,
criminalised and stigmatised.”

NAM's news coverage of the 22nd International AIDS Conference has been supported by Gilead Sciences Europe Ltd. and ViiV Healthcare.

Official conference partners

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member
of your healthcare team for advice tailored to your situation.